Month: February 2018

Lennon first saw a Geneticist when we was 6 months old and in the Neonatal Intensive Care Unit at Great Ormond St.

Lennon was 12 weeks premature and up until he rapidly deteriorated and became ventilator dependant, aged 5 months, the doctors and nurses involved in his care had all thought his medical problems were a result of being born too soon.

It wasn’t until Lennon’s first admission to GOSH, when many professionals from different specialist teams came to examine him, that it was suggested Lennon most likely had a genetic condition.

Lennon in Intensive Care.

That was just the start of our Genetic journey into finding a diagnosis for our little soldier – and the beginning of my love hate relationship with Google.

Over the first 4 years of Lennon’s life, he underwent every genetic and metabolic test available in the UK. All sorts of diagnosis’ were mentioned over that time – Schinzel Giedion syndrome, Rett syndrome, Mitochondrial disease, Pallister-Killian syndrome, the list goes on.

I became obsessed. Google was my best friend, yet my worst of enemies.

I rang the Genetics team on a regular basis, pestering anyone who answered the phone for test results.

All the tests came back negative including a DNA micro-array analysis.

Lennon was then put on the DDD study. Over the years we never had any results from it, despite my many information seeking phone calls. When the study finished in June 2017, we were told that Lennon was never signed up because his sample processed as ‘incomplete’ and was never followed up.

Subsequently, we were invited on to the genome 100k project and we had an appointment booked with Lennon’s Geneticist at GOSH for October 2017, for myself, Ian and Lennon to provide DNA samples and sign up. But Lennon died in August, just missing out on that appointment.

My quest to find a diagnosis for Lennon was beginning to consume my life.

Until one day when I sat down and really thought about it. What would a diagnosis change? What would a diagnosis mean? How would a diagnosis change Lennon’s life and how we help him to live it?

I slowly came to the conclusion that a diagnosis was just a word. A word that would explain the wonder of Lennon. Just one word to write on forms and tell people.

But that was all.

That one word wouldn’t change Lennon and it wouldn’t change how we looked after Lennon – nothing would be any different.

Enjoying the FunFair.

I began to forget about a diagnosis and focused my energies on researching, planning and booking the most amazing experiences for Lennon, and memories for our family.

Yes, he was undiagnosed and no one really knew what the future really had in store him.

Yes, Lennon was in a wheelchair, was deaf blind and had a profound and multiple learning disabilities and complex medical needs, but why should any of those factors be a reason to stop someone from experiencing a full rainbow of life? Why should Lennon miss out on living a full life?

We took Lennon swimming as much as we possibly could – this was always a mammoth task. Changing Lennon’s dressings, keeping an eye on his dropping blood sugars, and keeping him warm was difficult but his excitement and enthusiasm to be in the water made all the stress of the situation melt away.

We went Ice skating as a family every year on Lennon’s Birthday in December, it became a family tradition. Lennon loved ice skating and roller skating – the faster the better!

Speeding around the rink at Rollercity.

We fundraised and purchased a walking frame and a special bike.

Lennon spent hours toddling around in his walking frame when he was well, and in the summer, we used to stand his walking frame in a paddling pool and he would splash away with such delight.

Splashing in the paddling pool.

The bike was incredible – it was a life changer for Lennon. He was a real thrill seeker and was enraptured by speed. Ian would take him for long bike rides, speeding through long, windy country lanes. Lennon flapping his arms and screaming with delight!

Lennon thoroughly enjoyed his bike.

I found a company who provided ski lessons to people with a disability. This was a little trickier and took a lot of planning. Lennon’s pan hypopituitarism meant his body disagreed with cold temperatures. But we found ways to work around that. Skiing became a favorite activity for Lennon – the buzz of sweeping down the slopes enraptured him. His face exuded excitement and happiness.

We also took him down the mini slope in a donut ring!

Neither Ian nor I have ever skied, yet our disabled son has.

One of Lennon’s favourite activities.

We will be eternally grateful for the 10 and a half years we had with Lennon. A short life, but most certainly a life packed full of joy, excitement and happiness. And Lennon’s full life serves as a reminder that no matter what your disability or diagnosis, there are always ways to live your life – in the capacity you have – to the maximum.

Horse riding with school.

A few weeks ago I spoke to the Genetics team at GOSH. They informed me that they had stored various samples of Lennon’s – including his DNA, meaning that Lennon can still join the genome 100k protect. Ian and I have an appointment in March to provide our own DNA to be submitted alongside Lennon’s and to sign the forms.

And so the quest for Lennon’s diagnosis continues. Lennon truly was one in a million, and I’m certain when someone eventually finds a diagnosis for Lennon it will be extremely rare!

6 months of not climbing into my little soldiers bed every night to squeeze him tightly and kiss him goodnight.

Lennon in bed. He loved sleeping at home in his own bed.

The pain of living my life without Lennon increases everyday. I miss him. I miss my old life. I miss being Lennon’s Mummy. It hurts. It is still a deep, heavy pain that I cannot describe.

I’m beginning to realise that grief doesn’t leave you – It becomes a permanent fixture in your life. You have to learn to co-exist with grief.

—–

A few nights ago I had a vivid dream about Lennon. So intense and lifelike that for the first few seconds upon waking, I thought it was true.

I dreamt that Lennon had returned to life. I didn’t know how, but he was back with us, where he belongs.

I thought how lucky it was that we had kept his wheelchair – we could take him outside.

Lennon loved to be outside.

Lennon at his ‘happy place’ the village ford. He could sit for hours watching the ducks and the water flowing underneath the bridge.

I was pushing Lennon in his chair up a steep hill, but he was too heavy and we couldn’t reach the peak.

Then he was back in his bedroom, lying in his beloved fishbowl bed. I had forgotten to administer his medications. I was angry and disappointed with myself that I had forgotten my strict, daily routine and worried that he would become poorly because of a stupid mistake I had made.

I loved watching him sleep, especially when he put his hands under his head.

I subsequently moved Lennon’s large medication unit into his bedroom to help me remember.

—–

It was all a dream. When the cold, unwanted truth hit me, I sobbed.

I was crest fallen that he wasn’t back, he is gone. Gone forever.

I was also saddened by the thought that I have lost my skills. Skills that I had proudly built up over 10 years. Procedures that I will never carry out again. Replacing a surgical jejunostomy tube, passing a nasal gastric tube, deep throat suctioning, replacing a gastrostomy button, putting on an ileostomy bag, accessing a port-a-Cath and taking blood.

Bath time. Lennon spent less time in the bath than we did getting him dried and dressed!

Preparing Lennon’s medications during a hospital stay.

All that expertise built up over so many years. I was proud of the responsibility I had bestowed upon me – yes, the pressure of it was immense and overwhelming, but being competent in all the procedures Lennon needed to enable him to stay at home with his family and away from hospitals was incredibly gratifying.

Keeping Lennon at home was very important to me.

Life has changed so much.

It is becoming more and more apparent to me that I am no longer a part of the ‘Special kids mums’ club. I am no longer living an extraordinary life.